Science & Medicine

It’s time to move on

It’s time to move on.

I’ve grown old in this MPN world.

In the past 20 years, on my way to myelofibrosis, I’ve lost good friends to this disease and suffered the uncertainties and pain of many others. On behalf of patients, I fought several ferocious battles with self-styled experts, bureaucrats, drug makers and hematologists.

I need to stop losing friends and fighting losing battles.

MPNforum – volunteers, writers, physicians — helped bring us together, let us see one another’s faces and hear our stories, helped present the unfolding science. We reported the good and bad of the Jakafi story and drug pricing, started the Fatigue Project dialog, created the Zebra Coalition for patient advocacy, uncovered the hidden Sanofi story, created the MPN Quarterly Journal and the Interferon Papers and published four dozen monthly issues in the past four years. Plus special reports.

If that all reads like an obit, perhaps it should. It’s time to move on.

Although biased on behalf of MPN patients, the hallmark of MPNforum has been its objectivity, its adherence to professional journalistic principles.

That’s no longer possible.

With the advent of gene editing, I’ve become more an advocate than a journalist.We finally have the technology to address the root cause of our disease and not simply abate our symptoms temporarily through drugs that carry their own physical impacts. MPNs start with stem cell mutation and will only end with repair of that mutation.

While acknowledging our need for meds and the immense contribution made by scientists and technicians in discovering mutational targets and pathways, in advancing pharmaceutical arts, my own time is limited.

The mission now is to bring gene editing to MPN clinical practice.The first step is to secure working partnerships between hematologists and MPN researchers with genetic engineers, biochemists, and related scientists to study gene editing applied to MPN clinical applications.

We have strong support from the MPN Research Foundation, now offering $200,000 grants for research into the gene editing. We have some of the best scientists and clinicians helping us on the MPN Genetics consulting board – Levine, Kralovics, Verstovsek, Mesa, Harrison, Silver, Schafer, Crispino, Zhaohui Ye.

And we’re starting with a crack MPN team – Marina Sampanes Peed, David Wallace, Eileen Peed, Arch McCallister, Michelle Woerhle – that will grow in coming months. Our plan, under the direction of Eileen Peed, is to build a library of gene editing and MPN documents on our website to promote collaboration. We’re planning a preliminary meeting of partners late this Spring and expect to host a conference, hopefully with the help ofAnn Brazeau (MPN Advocacy and Education), yearend.

Thank you for your support and friendship. Ahead is a long and difficult campaign. I can only hope our efforts are worthy of your faith and, together, we can help end this bloody cancer forever. You’re welcome to participate at any level. Just get in touch.

It seems that I have had MF forever! I just about give up and think I can’t go on and then I start to have some good days. Don’t give up entirely, Zhen. You have been such an inspiration to me. You are one of the most awesome people.
Barbara

Hi, Barbara…You and I haven’t talked in forever. I remember your own struggles so well, both disappointments and successes. (And, of course your introduction to us all of the BMB drill.) I’m not giving up. Just, realistically, with the time and energy I have left I want to focus more directly on bringing gene editing into MPN clinical practice. MPNforum itself will remain on-line to share its archives and lists, MPNclinics and features and I’ll turn in a TSR newsletter now and then. And run a story if a patient or caregiver wants to publish. Meantime, do keep in touch. You have my email.